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This topic has 6 replies, 6 voices, and was last updated 1 month, 2 weeks ago by Yvette Haas.

  • Author
    • #26189
      DeAnn R

      GI issues might be the theme of the week. Since I’m still struggling with loose bm’s after starting Evrysdi I’m wondering if changing formula (I use a feeding tube for my main nutrition) would help. Yesterday I met with my dietitian and GI practitioner to talk about it. We decided to try a formula with added fiber to see if that would help bulk up the stool. Apparently fiber is a good binding agent. Sorry if it’s tmi. Anyway, we’ll see if it helps. Have you ever met with a dietitian? Did you find it helpful?

    • #26193
      Lupa F

      Be careful with fiber. A few years ago I tried taking some since I was having some issues in the bathroom. Over the next couple weeks I started feeling very woozy and lightheaded, especially while on the toilet. I felt like I was falling all the time. I then realized it started just after I started taking the fiber. Once I stopped, the weird head feelings went away and I felt normal again. I think it was making my intestines work so much my blood pressure dropped way too much.

      I’ve met with a number of dieticians. They’ve all said more or less the same things to me, but I was mostly concerned with weight loss and trying to find food I could make myself. I usually followed their advice for about 2 weeks and then went back to whatever.

    • #26194
      Alyssa Silva

      Seconding what Lupa said. In fact, I take fiber to help me go to the bathroom, not slow things down. If I take too much of it though, it can cause overactivity in my intestines.

      I have seen a dietitian before, but I haven’t found any real value from it. Especially since I only eat by mouth, it’s mostly things I can research on the internet. I think it’s good to speak to a dietitian about getting a baseline of what foods to feed your body when living with SMA, but they’re not a specialist I refer to on a regular basis.

    • #26195
      Tracy Odell

      I don’t find dietitians very helpful, either. They don’t understand about estimating the actual amount of movement we have (or do not have) compared to an average person.

      For me, taking a lot of fibre turned everything into my intestines like cement. So instead of things moving along nicely, things ground to a halt. Maybe that will work, in smaller amounts. There is a high fibre version of Ensure.

      I would suggest trying one thing at a time, giving it at least three days to see if it will have an effect. If you try two or three things at once, you won’t know what is working or if something is working opposite to something else. I would also suggest working with the gentlest intervention first – and go with your instinct.

    • #26196
      Kelly Miller

      I’ve seen a dietician one time, and that’s all I found tolerable. I tried getting information regarding switching from my formula due to severe stomach pain that had developed over time with this same fiber-rich formula. She didn’t want to acknowledge at all that it could be the extra fiber over the previous year causing, not only my pain, but possibly my severe constipation. I wanted to talk about changing to a real food blend product designed specifically for tube feeding. She hadn’t heard of it and didn’t have anything good to say about real food for me!

      I was angry enough to take this back to my GI doc and request we drop the whole dietician nonsense. While I understood this was the same as a doctor not knowing about my SMA needs, I couldn’t deal with someone who refused to accept my inner digestive workings had not changed just because my swallowing mechanics had. There was absolutely no reason I couldn’t still have real food pureed instead of formula. My GI was cool like that and switched me off the fiber-rich formula to the real food blend, and she added daily vitamins. I’ve been on this food for the last 4 years with no more stomach issues and a reasonable bathroom schedule. Never again for a dietician, because I know my body better than they do. And so do you DeAnn, even if you decide to work with them!



    • #26199
      DeAnn R

      Thanks for all the feedback. I’m less than confident the change in formula will help, but figure it’s worth a shot. The dietitian is nice, but as you pointed out not really familiar with SMA. It’s not always fun being a learning experience for them more than them being helpful for us. For now I’ll make this little change to see if there’s improvement. I do have a follow up in about 4 weeks so I should be able to tell if it’s helping by then.

      Kelly, I know I’ve asked before, does your insurance cover the Real Foods Blend?

    • #26200
      Yvette Haas

      I’m another one with a useless dietitian. Welllllll…. I should not say she is useless, because she does write the scripts I need, but I learned to just tell her what I want, and overwhelm her (easy) with a couple supporting documents, so she doesn’t try to do something different.
      If you are looking for a REAL food product, with a substantial amount of fiber, I suggest Liquid Hope. I used to be on formula (until I read the ingredients and freaked out), and then requested either Liquid Hope or Real Food Blends. Since switching, I’m generally healthier and my bathroom routine, which had previously been a bit difficult and only 2-3 times per week, is now an easy, predictable, every morning thing. That’s tmi, but whatever.

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